Saturday, 2 July 2016

The Day After My Birthday

-Feb 22 @midnight - 
At RUH. Had 3 very serious blood infections: a fungal bacterial yeast in my blood called Candida) , another blood infection and a bacterial infection and it was bad. It could of easily killed me. I was so extremely swollen. My eyes got swollen to the point where I couldn't see and you couldn't even see my eye lashes I was so puffed up. I gained

up to 60lbs of water in just a few days. Had lots of specialists this time around: a nephrologist, a urologist, infectious disease, medicine, a hemotologist, ICU doc, vascular/surgery docs and who knows who else. 
I almost went to ICU and almost had to be put on life support. Things slowly became stable and started getting a little bit better or at least enough to stay out of the ICU but went to an obs (24hr observation) room instead. Ugh it was so bad. So swollen for weeks. My face, neck, torso, back, arms, hands, legs, feet, everything is swollen. 
I just got moved back to obs cuz my sugars were running real high like 28 so they put me back on an insulin infusion..for one day for one high- so stupid!
My hemoglobin in back down around 75 (normal for an adult woman is around 130) so I'm getting another blood transfusion, 1 unit. I had 2 blood transfusions here at RUH this stay both being one unit of blood and I believe I also had 2 or maybe 3 albumin transfusions. 

I'm also waiting to go get my central line out and get another picc put in. After 4-5 days of having the picc line it got infected and another blood clot which was so very painful and swollen, my poor fat right arm. Turns out that the infection they found at the end of my picc line was MRSA which got into my blood which is Extremely dangerous and can kill you. The other times I had it or VRE they were just on the skin but this time the MRSA got into my blood. I also have pneumonia. It's tough to talk and I loose my breathe easily. I'm on an oxygen mask. My oxygen drops to about 80, should be 100. 
I'm getting a Hickman line put in tomorrow morning (April 6/16) It'll be nice to have a good permanent line rather then a picc line :) It took about half an hour. It wasn't too bad pain wise but every time they pushed the tube in further it really hurt. I actually couldn't believe how much pressure the radiologist had to use to get the line in to where it's gotta go. It's pretty sore and I imagine it will be for a few days. 
I am now finally noticing some of the water starting to come off. My arms and legs are still pretty tight and swollen but it is noticeable the lasixs is working.
It's Thursday April 14/16 and it's been 9 days since I got my Hickman line and it's still bleeding at the entry site. Radiology is hopefully gonna come see me tomorrow and will hopefully fix it with more stitches or something. It's kinda scary with it bleeding cuz of it going into my jugular vein. Scary Stuff! Yes I am tough but I can still be scared. 

April 26/16 cataract surgery on left eye@city hospital. 

April27/16 Had a meeting with mom dad Brian Witt, Maureen, Michelle, a couple docs and Melissa( social worker) -this is some of my medical team). Gonna have regular meetingswith the same people and 3 docs.
May 20/16 Met with infectious doctor and spoke to pharmacist, I have another fongal infection on my Hickmen so it has to be pulled and for about 14 days my meds will either go though a butterfly, a regular IV, or IM (In muscles). It's gonna be another tough fight but I'll get through!

May 22/16 found out we have to pull my Hickmen. Been getting HDC shots or IM shots and they all hurt so much. One for gravol, zofran, dilaudid, diazepam, all hurts more then it has ever has before when I've had these types of subque injections. 

May 23/16 Got Hickmen removed due to yet another fungal infection. So as of today I have NO IV access, first time in about 2 years. 

June 22/16 Still no IV access and obviously still in. Been 4 months. Things are still bad still getting sick still severely nauseated still in pain. It's messed up! They've just loaded me up with Ativan. I've been sleeping, thankfully, but I don't want to be on a bunch of Ativan. It's time to go back to what we know works to get through and past an episode then regroup and try something new! NOW!